Yes / NIHR - Health and Social Care Delivery Research (HSDR) programme (project number NIHR129488)

Background: Due to the growing number of individuals suffering from dementia, many will require acute hospital care as other indirectly related conditions appear throughout the course of the disorder. Significant concerns have been raised about the provision of quality care. Understanding their experiences is essential. Method: Semi-structured interviews were conducted with caregivers and people with dementia after acute hospitalization. Data was analyzed using qualitative content analysis. Results: Twenty-nine participants experienced hospitalization and commented primarily on the negative experience. Despite the importance of caregiver involvement, and evidence of caregiver burden, they commented they were rarely included in care plans and lacked support. Continuity of care was said to be affected by absent communication amongst health care team members. The acute hospital process and environment was perceived as not supportive of dementia person-centred care principles, with reports of poor staff knowledge and recognition of the disorder. Conclusion: Reports of acute care hospital experiences of people with dementia and their caregivers provide insights for potential gaps in care delivery.

The high turnover rate of graduate nurses is a challenge in the United States' hospitals because of high job dissatisfaction rates. The premature disaffiliation of the graduate nurses is costly for organizations and can significantly affect the quality and safety of patient care due to the inadequate supply of adequately prepared staff nurses, particularly in the long-term acute care hospitals. The purpose of the project was to decrease the turnover rate of graduate nurses in a long-term acute care setting from 40% to 20% through modification of the nurse residency program by applying an intervention based on Bauer and Erdogan's theory of organizational socialization. The intervention included provision of psychosocial and educational support to the graduate nurses in addition to the formal classroom learning and a preceptorship with experienced registered nurses. The project used a prospective descriptive design to examine whether the provision of psychosocial and educational support intervention to all newly hired graduate nurses for four weeks beyond the existing residency program would improve the nurses' perceptions on items of the Casey-Fink Graduate Nurse Experience Survey and decrease the turnover rate from 40% to 20%. Eighteen nurses completed the survey at eight weeks (the end of the existing residency program) and at 12 weeks (when four additional weeks of psychosocial and education support ended). The pretest and posttest survey results were compared using descriptive statistics. The graduate nurses' self-reported confidence level, job satisfaction level, and role transition experiences all improved after the intervention. The social change resulting from the project was positive residency learning experience for the graduate nurses that may result in better patient care, commitment to the organization, and retention of nurses.

ABSTRACT Speech-language pathology practice in the acute hospital setting has changed dramatically over the last 25 years. A significant increase in the number of referrals and a broadening of the speech-language pathologist’s caseload to include patients with dysphagia has meant there has been less time to see hospital inpatients with communication disabilities. This change in practice has caused speech-language pathologists working in the acute hospital setting to question their role in relation to patients with communication disabilities in the acute hospital setting. The thesis applies the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework to explore the role of speech-language pathologists in the acute hospital setting, specifically the acute hospital stroke unit, in relation to patients with communication disabilities. The ICF proposes that a health condition can be understood in terms of four separate components. These components are Body Structures and Functions, Activities and Participation, Environmental Factors and Personal Factors. Whilst the distinction between body structures and body functions within the ICF Body Functions and Structures component is clear, there is less clarity about the relationship between the ICF concepts of activity and participation in the ICF Activities and Participation component. Therefore, the first part of the thesis explores the conceptual similarities and differences between the concepts of activity and participation generally and communication activity and communication participation in particular. This discussion concludes that the ICF concepts of activity and participation are distinct concepts that are considered separately in this thesis. Following this conceptual clarification, the thesis applies the ICF framework to patients with communication disabilities in the acute hospital stroke unit. Specifically, patients with communication disabilities are described from the perspective of communication-related body functions within the ICF Body Structures and Functions component, communication activities within the ICF Activities and Participation component and communication-related environmental factors in the ICF Environmental Factors component. It is important to understand how many patients experience a communication disability in the acute hospital stroke unit so that adequate supports can be developed. Therefore an efficient way of identifying patients in acute hospital stroke units with a communication-related body function impairment such as hearing, vision, speech, language and/or cognitive communicative impairment was required. Hence, the first study describes the development of ICF compatible scales, called the OHW scales, to rate a patient’s degree of speech, language and cognitive communicative impairment. These three rating scales were called the OHW scales because they reflect the WHO framework and also represent the authors’ initials. The concurrent validity and interrater reliability of the OHW scales were then investigated. Results indicated that the OHW had acceptable levels of concurrent validity against standardised measures of speech, language and cognitive communicative impairment. The speech and cognitive communicative OHW scales also demonstrated moderately high interrater reliability, but exact agreement on the OHW language impairment scale was low. At a minimum, the OHW scales were valid measures of speech, language and cognitive communicative impairment and therefore they were used by the researcher to determine the number of patients with communication-related impairments in the acute hospital stroke unit. Patients in acute hospital stroke units may have communication-related impairments, such as speech, language or cognitive communicative impairments as a consequence of stroke. Patients may also have communication-related impairments (e.g., in hearing, vision and cognitive communicative) due to ageing and age related illnesses. Therefore, the second study of the thesis describes the number of patients with communication-related impairments in acute stroke units, regardless of the cause. Of the 69 patients screened, 88% had a mild or more severe communication-related impairment. In addition, 69% of inpatients, screened on two or more measures, had multiple communication-related impairments. Although many patients in acute stroke units have communication-related impairments, what may be particularly important is how many patients experience difficulty communicating their healthcare needs with healthcare providers in acute hospital stroke units. The ICF describes a person’s ability to carry out an activity, such as communicate healthcare needs, as an activity limitation. The ICF describes activity limitations in four different ways. Two ways are capacity with assistance and performance. Capacity with assistance indicates the person’s highest probable level of function in an activity given assistance and performance indicates a person’s level of function in the context of everyday life. Therefore, the third study of the thesis details how many patients experienced capacity with assistance limitation, that is, difficulty communicating their healthcare needs given assistance, and performance limitation, that is, difficulty communicating their healthcare needs during everyday healthcare routines. Results indicated that 51% of 65 patients had a capacity with assistance limitation and 57% had a performance limitation. Strong and significant relationships were found between patients’ degree of communication-related impairments and their degree of communication activity limitation, in both capacity with assistance and performance. Furthermore, the presence of a communication-related impairment accounted for up to 77% of the variance in a patient’s capacity with assistance limitation. Such impairments only accounted for up to 32% of the variance in a patient’s performance limitation. This finding suggests that other factors, such as environmental factors also affect a patient’s ability to communicate, particularly during everyday health care routines. In light of this, a review of the literature on the range of environmental factors that influence communication between patients with communication-related impairments and healthcare providers in the acute hospital setting was conducted. The review of the literature indicated the need for research on the environmental factors that influence communication between patients and healthcare providers in the acute hospital stroke unit. Therefore, the final study of the thesis investigates this further. This study employed a focused ethnographic methodology to identify the range of environmental factors that appeared to influence communication between patients and their healthcare providers. Seven themes were identified including the healthcare providers’ knowledge of communication-related impairments, skills, attitudes, and individual characteristics. Other themes included the presence of family, the physical environment and hospital systems and services. In summary, this series of studies indicates that the majority of patients admitted into acute hospital stroke units have a communication-related impairment and approximately half to two thirds of patients experience difficulty communicating their healthcare needs with healthcare providers. Whilst having a communication-related impairment increases the likelihood that a patient will experience difficulty communicating with healthcare providers, other factors, such as the communicative environment also appear to play an important role. Speech-language pathologists working in the acute hospital stroke unit may have an important role in identifying patients who are experiencing difficulty communicating their healthcare needs and supporting these patients and their healthcare providers to communicate in optimal ways. Further research is required to demonstrate that improving a patient’s ability to communicate with his or her healthcare providers improves a patient’s health outcomes. With this evidence, speech-language pathologists may be more able to support patients with communication disabilities to get the healthcare they deserve.

Palliativ vård är en vårdform och filosofi med fokus på livskvalitet och symtomlindring. Konsensus råder att den palliativa vården bör sättas in i så tidigt skede som möjligt för att ge patienter och närstående stöd att orka och förlika sig med situationen. Vilka attityder som finns hos vårdgivare har betydelse för om palliativ vård erbjuds. Tillgång till kompetens, kulturella aspekter och sociala skillnader har stor betydelse för hur vården utformas. Trenden i akutsjukvården är att andra kroniska diagnoser än cancerdiagnoser som länge har varit dominerande, förväntas öka. Detta ställer stora kunskapskrav på hälso- och sjukvårdspersonal. Alla vårdgivare ska kunna ge grundläggande palliativ vård oavsett vårdform och alla individer som är i behov av palliativ vård ska kunna erbjudas den oavsett ålder, diagnos eller bakgrund. Trots detta så visar forskningen på att varken vårdgivare, patienter eller deras närstående vet innebörden med och förutsättningarna för palliativ vård. Sjuksköterskan är ofta den som är närmast patienten och dess närstående och den som ska kunna verka för att organisationen och vården runt patienten fungerar. Genom att öka medvetenheten kring palliativ vård kan patienter och dess närstående ges en förbättrad livskvalitet den sista tiden i livet.   Syftet med denna enkätstudie var att beskriva sjuksköterskors erfarenheter av och kunskapsbehov om palliativ vård inom akutsjukvårdens slutenvård.   Metoden som användes var en mixad, en övervägande kvantitativ beskrivande del som analyserats med beskrivande statstik samt en mindre kvalitativ del för de fritextfrågor som enkäten hade som analyserades med en kvalitativ innehållsanalys.   Huvudfynden i studien visade att majoriteten (66 %) av sjuksköterskorna upplevde att den palliativa vården erbjöds till alla som var i behov av den oavsett diagnos och/eller ålder i sin verksamhet. Majoriteten upplevde även att den palliativa vården erbjöds sent (36 %) eller mycket sent i förloppet (42 %). För de allra flesta beskrevs den personliga innebörden med begreppet ”palliativ vård” vara en vård som syftar till att lindra och förbygga såväl fysiska, psykiska, sociala och existentiella symtom och behov hos människor och dess närstående som befinner sig i palliativt skede. Men upplevelsen beskrevs även med att det fanns olikheter och ojämlikheter så som vård i för sent skede, brister i symtomhantering och multiprofessionellt teamarbete samt kommunikation. Majoriteten av informanterna uttryckte även ett stort behov av etisk handledning och fortbildning i palliativ vård för att bättre kunna vårda och stödja patienter och dess närstående i palliativ fas.   Slutsatsen kan hänföras till att medvetenheten om palliativ vård i dess rätta begrepp i enighet med filosofin och värdegrunden börja sakta men säkert få en plats i akutsjukvården och i samhället men att det behövs mer kunskap om den palliativa vården och framför allt mer tid till reflektion och handledning till sjuksköterskor som kan stärka sjuksköterskerollen. / Palliative care is a form of care and philosophy focused on quality of life and symptom relief. Consensus recommends that the palliative care should be introduced as early as possible to allow patients and close relatives to endure and relate to the situation. What attitudes that healthcare providers have, are important for whether palliative care is offered. Access to skills, cultural aspects and social differences is of great importance for the way in which care is taken. The trend in emergency care is that other chronic diagnoses than cancer diagnoses have been dominant for a long time, are expected to increase. This places great knowledge requirements on healthcare professionals. All healthcare providers should be able to provide basic palliative care regardless of the form of care and all individuals in need of palliative care should be offered regardless of age, diagnosis or background. Nevertheless, research shows that neither caregivers, patients nor their close associates know the meaning and the conditions for palliative care. Nurses is often the closest to the patient and its close relatives and the person who can work for the organization and care around the patient. By raising awareness about palliative care, patients and their close relatives can be given an improved quality of life at the end of their lives. The purpose of this questionnaire study was to describe the nurse's experience and knowledge of palliative care in the field of inpatient care in emergency care. The method used was mixed with a predominant quantitative descriptive part which was analyzed with descriptive statistics and a less qualitative part of the open ended questions that was analyzed with a qualitative content analysis. The main findings in this study showed that the majority (66%) of nurses felt that palliative care was offered to all those who needed it regardless of diagnosis and/or age in their activities. The majority also experienced that palliative care was offered late (36%) or very late in the process (42%). For the vast majority, the personal meaning of the term "palliative care" was a care aimed at winding and preventing both physical, mental, social and existential symptoms and needs of people and their relatives who are in a palliative phase. However, the experience also described that there were differences and inequalities such as care in the late stages, shortcomings in symptom management and multi-professional teamwork as well as communication. The majority of informants also expressed a great need for ethical guidance and continuing education in palliative care in order to better care and support patients and their relatives in the palliative phase.   Conclusion can be attributed to the fact that awareness of palliative care in its correct concept, in agreement with philosophy and value base, slowly begins to take place in emergency care and in society, but it is necessary more knowledge of palliative care and more time for reflection and guidance to nurses who can strengthen nursing caring.

No / he development, pilot and evaluation of a brief psychosocial training intervention (BPTI) for staff working with people with dementia in an acute hospital setting are described. The project had two phases. Phase one involved adapting an existing competency framework and developing the BPTI using focus groups. For the pilot and evaluation, in phase two, a mixed methods approach was adopted using self-administered standardised questionnaires and qualitative interviews. Qualitative analysis suggested that delivering skills-based training can develop communication, problem-solving and self-directed learning skills; benefit staff in terms of increased knowledge, skills and confidence; and be problematic in the clinical area in terms of time, organisation and the physical environment. These factors must be taken into consideration when delivering training. These changes were not reflected in the quantitative results and measures were not always sensitive to changes in this setting. Definitive conclusions cannot be drawn about the efficacy of the intervention, due to the contradictory outcomes between the quantitative and qualitative data. Further developments and research are required to explore how staff and organisations can be supported to deliver the best possible care.

Yes / The acute hospital is a challenging place for a person with dementia. Behavioural and psychological symptoms of dementia (BPSD) are common and may be exacerbated by the hospital environment. Concerns have been raised about how BPSD are managed in this setting and about over reliance on neuroleptic medication. This study aimed to investigate how BPSD are managed in UK acute hospitals. Method(s): A longitudinal cohort of 230 patients with dementia admitted to two acute NHS hospitals. BPSD were measured every four days (Behave-AD scale), as well as documentation of pharmacological prescriptions and non-pharmacological management. Results: The overall prevalence of BPSD was 75%, with aggression and activity disturbance being the most common. Antipsychotics were prescribed for 28 (12%) patients; 70% of these prescriptions were new on admission. Benzodiazepines were prescribed for 27 (12%) patients, antidepressants were prescribed for 37 (16%) patients, and sedatives were prescribed for 14 (3%) patients. Patients who were prescribed antipsychotics, after adjusting for end of life medication, age and dementia severity, were significantly more likely to die (adjusted hazard ratio 5.78, 95% CI 1.57, 21.26, p= 0.008). Nonpharmacological management was used in 55% of participants, most commonly psychosocial interventions (36%) with little evidence of monitoring their effectiveness. A form of restraint was used during 50 (22%) patients’ admissions. Conclusions: Antipsychotic medications and psychosocial interventions were the main methods used to manage BPSD; however, these were not implemented or monitored in a systematic fashion. / Alzheimer's Society; BUPA Foundation

No / Dementia is common in older people admitted to acute hospitals. There are concerns about the quality of care they receive. Behavioural and psychiatric symptoms of dementia (BPSD) seem to be particularly challenging for hospital staff. Aims To define the prevalence of BPSD and explore their clinical associations. Method Longitudinal cohort study of 230 people with dementia, aged over 70, admitted to hospital for acute medical illness, and assessed for BPSD at admission and every 4 (± 1) days until discharge. Other measures included length of stay, care quality indicators, adverse events and mortality. Results Participants were very impaired; 46% at Functional Assessment Staging Scale (FAST) stage 6d or above (doubly incontinent), 75% had BPSD, and 43% had some BPSD that were moderately/severely troubling to staff. Most common were aggression (57%), activity disturbance (44%), sleep disturbance (42%) and anxiety (35%). Conclusions We found that BPSD are very common in older people admitted to an acute hospital. Patients and staff would benefit from more specialist psychiatric support.

The present thesis which focuses on the needs of people with dementia and the support of their independent living in the home environment was written within the framework of the PhD study in Longevity at the Faculty of Humanities, Charles University, GAČR project co- researcher and AZV participated in during post gradual studies. Presented research focuses on the needs of home dwelling people with dementia, the needs of their informal carers, the needs and experiences with providing care of patients with dementia in acute hospital care. The text of the thesis is divided into four parts, which are based on texts reviewed and published or prepared for publication. The first three parts present own research aimed at identifying the needs of people with dementia and experiences with caring of them in their home environment and in the hospital environment during acute care. The final part presents the possibilities and services to support their independent life in their own environment.

The alleviation of suffering lies at the core of compassionate end-of-life care, yet little is known about the lived experience of suffering. Motivated by a series of reports on poor care of older people in hospital, this study addresses suffering in older people at the end of life in an acute hospital ward in the United Kingdom. Methods were developed from a synthesis of ethnographic fieldwork and phenomenological interpretation. Data were collected using participant observation on an acute care ward for older people in a hospital in Northern England, over 186 hours between June and August 2015. Data included field notes, documents, photographs and informal interviewing. Staff and patient participants were identified using theoretical sampling. Data were analysed using a hermeneutic approach involving a continuous process of analysis, further data collection, posing of problems and questions, and interpretation. This cyclical approach to the data enabled the development of interpretive perspectives which could then be further explored in the field. Findings suggested that care for older people was shaped by competing ideologies of care and organisational regulatory processes. Particularly when there was ambiguity regarding prognosis, there was a tendency for care to default to a ‘rescuing’ acute care model. Through exploring the experiences of individual patients and placing these in the context of cultures of care, I suggest that iatrogenic suffering was a significant concern that often went unrecognised. Patient-centred goals must be more focused upon avoidance of iatrogenic suffering. Recommendations include innovations in clinical education and multiprofessional working.